“All my life I was blind, I was blind, now I see” -The Lumineers (with credit, I believe, to The Bible)
This lyric swims around in my head a lot lately as I’m out and about. When I see the young man at Half Price Books with a walker and an awesome communication device happily perusing the titles. When the bagger at Kroger sings a lovely “Good Morning” song. When I greet the various members of the cleaning crew at the YMCA. And, of course, when I see so many delightful children and their adoring families roll through the Perlman Center at Children’s. I was a decent person (I think) before Joel rocked my world, but I didn’t really see these people before. I sort of looked through them, and (I’m embarrassed to admit) probably pitied them. [Which is even more absurd if you know that my mom gracefully battled the effects of Polio throughout her life with various pieces of equipment.] But do you know what I do every time I see an adult or teen with obvious physical and/or mental challenges A.J. (After Joel)? I thank God for this beautiful soul who is doing this work or seemingly simple activity, and I pray that Joel will be able to have that some day. Whether it’s a job (or whatever), but I hope he has that thing he can do that makes him an integral part of society. And I kick my former self for her narrow definition of success.
Joel’s village has practically doubled this fall. With his Hypotonic CP diagnosis came the addition of biannual visits to CP clinic, comprised of a rehabilitation doctor and team of therapists. They were great and seem like an excellent resource. Joel and some buddies also advanced into a true toddler classroom at Perlman with new therapists. This was a big step for mama too because it’s his first drop-off program. We both have done surprisingly well with the transition!
Joel has been evaluated and is all set to begin preschool right after his third birthday (inconceivable!) next month. We knew we picked a phenomenal school district in which to raise our children, but we had no idea just how important the preschool special education services would become. We are so lucky that there is a preschool classroom with half general ed. and half special ed. students in the same building where big brother will start Kindergarten next year. I was a teacher and know basically what an IEP (Individualized Education Program) entails. What I didn’t expect was how it would feel to walk into a meeting with a team of nine experienced professionals who have carefully analyzed our child and formulated a set of goals tailored specifically to him. I must say it feels pretty amazing. They know he’s a gift, and they are going to push him forward. [Insert mama’s sigh of relief here…]
Part of Joel’s forward progress has been some ridiculously typical toddler behavior. He dumps bins of toys, bangs cabinet/all other doors continuously, destroys all structures big bro leaves within his reach, and even pulled a garland of wooden beads completely off our Christmas tree. In a feat that terrified me and thoroughly elated him, he took off down our basement stairs when the door was apparently left ajar. I found him ten feet across the (thankfully carpeted) floor, grinning as if he’d won a huge prize. He was completely fine. Luckily we were already heading to the pediatrician’s office that day. We also installed another gate to keep Evel Knievel safe.
We also just got word today that we really, truly should have Joel’s wheels in our hands by the end of the year. Sometimes when I’m discussing the entire scheduling/approval/ordering mess I feel like Buddy the elf and “the seven levels of the Candy Cane forest”, except I’m talking about seven levels of insurance Hades. Seriously, people with special kiddos have an endless list of other things to do besides battle for basic necessities. Completely exhausting, but Santa is apparently on the case because *fingers crossed* it seems to actually be happening.
At this time of year, we like to count our blessings. Joel has brought us some of the most incredible people we never would have met if he wasn’t Joel. He has also reminded us that we were surrounded by some pretty fantastic people even before he was born. Thank you for your encouragement and support, dear friends and family. Your love and kindness mean more than we could ever express. Thanks for joining us on this journey!